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    Includes Expert Content
    On Hospice and End Stage Dementia
    MacalusoT1 posted:
    Hello -

    My mother is 85 and now in an ALF (after first being admitted to a hospital for a UTI and then spending four weeks in a rehab center). She is not at all mobile due to a stroke back in 2000 which resulted in substantial residual damage to the entire left side of her body. About four years ago when she was in another rehab center after a fall a doctor told her (not the family, mind you) that she has AD - we hoped he was wrong but unfortunately it is clear he was right.

    The biggest problem we face right now is that she does not want to eat. Period. And, increasingly, she does not want to drink anything. She has classic AD symptoms now: fast heart rate, rapid breathing, high anxiety. Earlier this week she had (yet another) ambulance trip to the ER where urine, x-ray and blood tests came back normal. They hydrated her via IV, discharged her (palpitations was the primary Dx, followed by dementia as the secondary Dx) and now, two days later she again has a fast heart rate and very rapid breathing. She does not want to eat. Does she want to die? We don't know that she is sufficiently aware to make that decision. She has told me and my brother in earlier times that she did not want extraordinary measures - but, unfortunately, that directive is not written down. My Stepfather is a kind and sensitive man (78) who has made it possible for her to stay at home for the past 12 years since her stroke but he is wearing down and this is, of course, very hard for him to watch.

    I apologize for taking so long to get to my questions. Here they are:

    (1) In your experience will an MD likely be willing to write a script for hospice care when the reason is end stage dementia? Does there have to be another underlying reason?

    (2) Is there a choice (other than feeding tube or hospice care) for a demented patient who has no cancer or heart disease but does not want to eat or drink? Am I missing something?

    (2) We have experienced her pulling out an IV already and do not think we want to opt for a feeding tube. If that is not done, and she continues to refuse to drink and eat, what should we expect next? The ALF where she is presently located is certified to handle hospice care (if we can get the Doc to write the requirement for it). Should we leave her there or bring her home, bring in an RN and make her as comfortable as possible there?

    I would appreciate any wisdom you can offer. Thank you, in advance. Tina
    cjh1203 responded:
    I'm very sorry that your mother and your family are going through this tough time.

    I'm not a medical professional, so what I say is just whatever I've picked up in talking to people, learning from people on this board, and my own experience and research.

    It sounds like your mom is probably very near the end of her life. The not eating and drinking isn't necessarily because she's made a conscious decision not to, but most likely because her body is just winding itself down. There probably isn't much point in forcing the issue with a feeding tube.

    Hospice care would be a godsend for all of you at this point. If a doctor thinks a patient has less than six months left, he or she can arrange for hospice care, so it would be good to discuss this with your mother's doctor as soon as you can.

    It would probably be best to keep her where she is because she's used to it. The hardest thing for an Alzheimer's patient is a change in routine, and it would probably be extremely stressful and frightening for your mother to move into your home.

    My heart goes out to you, but I hope you can find the help and support you need as you go through this. Please let us know how you're doing.

    Best wishes.

    Judith L London, PhD responded:
    Hi Tina,

    Sounds like the family has been facing so much throughout this journey. Hospice is available for your Mom - the people caring, considerate and kind.

    Not eating and drinking often is the way a peron's body starts to shut down. You not wanting her artificially fed is wise - it can be traumatic. I have read and heard that not eating or drinking is a painless, sometimes euphoric experience and part of the letting go process. It sounds like your mother is naturally entering this last phase.

    Sending you courage and comfort,

    MacalusoT1 replied to Judith L London, PhD's response:
    Thank you, Carol and Judy for your kind responses to my initial email. The situation with my mother (Ann) is somewhat better at this time (for now, at least). The ALH Director was able to get a doctor to prescribe an antibiotic for what he diagnosed (over the phone) as bronchitis. That helped a lot. She began to eat again (not much, but enough to keep going).

    Then, last week my Stepdad convinced the General Practitioner who has treated Ann for years to see her at the ALH (my Stepdad picked him up from his office and then drove him back - this after the Doc initially refused to make the visit), so Ann was finally examined by someone who knows her medical history. The doctor told Bob he does not believe it is time for hospice yet; he prescribed medication for her chronic body pain and increased her heart medication to decrease the rapid heart rate.

    I guess Ann's current situation will continue to slowly decline until it reaches a point where the Doctor believes it is time to write an order for hospice or my Stepdad is faced with a decision about something like a feeding tube or resuscitation.

    The problem now is that Ann wants to spend all day in bed, and that means we will likely have to deal with bedsores and she will lose the little bit of strength remaining in her muscles. The ALH staff do their best to keep her sitting in a wheelchair and in the common room during the day (but she can be persistent).

    My Stepdad visits her every day but even that is a double edged sword because she turns into a child when he walks in - the reality is that she does better when he is not there and she has to engage with the other residents and staff.

    In the past when my brother and I tried to get Ann to consider signing an Advanced Directive, she did not want to focus on it. I think it is now probably too late.

    Can either of you recommend any online resources where family members can see sample advanced directive language? In cases where the patient is no longer mentally competent, are there case studies we can turn to in order to find out how other families are dealing with this? I would really like to understand the decision thresholds (e.g. no longer eating, length of time comatose) better so that we can prepare my Stepdad for when decisions have to be made.

    Thank you, in advance, for any advice you can provide.

    Regards, Tina
    cjh1203 replied to MacalusoT1's response:
    Hi Tina-

    I'm glad that things look a little bit better now, and that your mother doesn't need hospice care yet.

    I wonder if the sleeping might be from being over-medicated? Maybe you could give a list of her medications to your pharmacist and see what he/she says. I suppose, though, it could also be just a total lack of energy because of all of her health problems. Have her vitamin B and D levels been checked? Could she possibly be dehydrated?

    Unfortunately, I think that sleeping all the time is also one of the symptoms of later-stage Alzheimer's and, other than checking for physical causes, I'm not sure if there's much that can be done.

    Does your mother recognize your stepfather and know who he is? If she doesn't, there's probably nothing to be gained by his continuing to visit if it causes problems with her. If she does know who he is, that's a tough one, though. You'd hate to tell him not to visit, for both their sakes. Maybe if he could just keep his visits brief, that would help.

    Regarding the advance directive, I think this is an area where the Alzheimer's Association might be a big help to you. Here is a site that will give you forms for your state. I would definitely recommend getting advice from the Alzheimer's Association, though. This is something they've undoubtedly counseled a lot of people about.

    Thank you for your updates -- I hope you'll continue to let us know how you mother is doing.

    EdFcaregiver replied to cjh1203's response:
    • One of my daughters would whole heartedly agree with you about UTI as she claims her mother has suffered 23...not sure is 23 1/2 of sleep is UTI or end stage? Great reply about the body sending a message...thanks, EdFcaregiver
    MacalusoT1 replied to cjh1203's response:
    Update on Ann (6/26/12) -

    Hello Carol and Judy -

    We seem to have reached some level of equilibrium with Ann right now. I visited about ten days ago and sat with the ALH Director and my Stepdad to discuss Ann's care plan. Ann is eating pureed food and, most importantly, drinking enough water and juice to stay hydrated. The ALH Director faxed a request (with our approval) to Ann's GP for orders for (1) physical and speech therapy and (2) a hospital bed. She explained that the first order would result in an assessment of Ann's abilities; the speech therapy is to try and strengthen the muscles in her throat so she can continue to be able to swallow (apparently loss of swallowing ability happens with late stage AD and Ann's throat muscles are already compromised by the stroke). The hospital bed will hopefully be less likely to result in bed sores (because Ann still wants to spend her days in bed). Fortunately, the ALH personnel are caring but firm about her need to spend at least a few hours each day sitting up in a wheelchair so she is not disruptive at night (which is what happens if/when she sleeps all day) and the pressure points on her bottom get a break.

    I found some helpful templates for Advanced Directives on the State (Virgina) web site which I have shared with my Stepdad and my brother. I also checked out the web site that Carol recommended. Given Ann's current mental state I think we probably will need a judge's approval to have my Stepdad sign an AD on her behalf (and my brother is looking into the best way to do that).

    Carol's suggestion that my Stepdad not visit Ann every day (and not stay for too long when he does visit) was echoed by the ALH Director when we met with her. It seems to also have come as something of a relief to my Stepdad; so, he has been taking a day off periodically.

    Let me offer some words of wisdom from my sister-in-law who retired after being a hospice nurse for many years. Yesterday she called to get an update and I told her what I have written above. Her words to me were helpful and consoling..."If your Mom is not in pain nor in distress and wants to sleep - let her do so (although protection from bedsores is important). Her body is slowly shutting down, she is comfortable, being well taken care of and likely not aware of all that is taking place. At this stage this is the best you can hope for."

    I will admit that I tend to be something of a control freak. In situations where you have so little control, it is reassuring to hear from knowledgeable people (including those on this website) that you are doing all you can. The whole situation is sad - but it is reality. I don't know how long it will continue this way - or when we may be faced with tough decisions - but, for now, it is what it is (and it could be worse).

    Thanks for listening. Regards, Tina

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